Gary Jackson
Confession: I’m a slow writer. So slow, a friend once gave me the same advice that Miles Davis gave John Coltrane when Coltrane confessed he didn’t know how to stop playing sometimes: “Try taking the horn out of your fucking mouth.”
I’d like to, but I often don’t know what I’m after when I write the first line or initial scrap of language that blooms into a first draft. “holoprosencephaly” was no different: it started with my desire to understand the disorder that afflicted my sister—a subject I rarely discuss outside poetry. In initial drafts, I incorporated the medical definition and hewed close to the denotative meaning as I folded in other subjects like mutants, superheroes, and exploitation in couplets—intentionally bucking the definition form (which I would later embrace).
Another confession: I love to tinker with things like computer hardware, recipes, syllabi, so it’s no surprise that I love revision. I’m always chasing different angles of access and approach writing with wild abandon. Anything can and may go. So, my “finished” drafts usually look quite different from their original forms. In my early drafts, I realized I had planted seeds to other poems in “holoprosencephaly,” and despite my initial insistence on referencing mutants and superheroes, the poem insisted otherwise. Another learned skill: getting out of the way of what your poems want/need to say.
Three years and twenty-four drafts later, I removed the medical jargon and instead relied on my limited understanding and intimate relationship with holoprosencephaly as a starting point—and the poem became a reckoning, not with just the disorder, but with how little I understood its impact on my mother—something I hadn’t intended to explore. And isn’t that the point? The poem as an act of discovery for both poet and reader.
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photo credit: Ben Chrisman
Poem was previously published in Bennington Review Issue #3, Summer 2017 and origin story: poems by UNM Press 2021.
< early draft >
Holoprosencephaly
(hŏl'ō-prŏs'ěn-sěf'ə-lē)
[holo- + prosencephlaon] failure
of cleavage of the prosencephalon with a deficit in mid
line facial development. Cyclopia occurs in the severe form.
Those affected may share common traits
with Polyphemus (poluphēmos), which in Greek means
famous; as in being in/sub/super/human makes one famous.
Famous as in outcast, as in
exotic, as in
other. The genetic basis is diverse:
caused by mutation in the TGIF, ZIC2, PTCH1,
and/or gli2 genes. An extra copy of chromosome
13: as in mutant
as in Cyclops, as in another famous mutant.
Signs may be
a hard-head newborn no soft
spot great-grandmother recalled.
Characteristically, low-set ears, bilateral cleft
lip and palate, microcephaly, ocular
anomalies, mental retardation. Most die within
the first days or weeks of life.
No cure, but symptoms
are treatable.
< FINAL draft >
Holoprosencephaly
(hŏl'ō-prŏs'ěn-sěf'ə-lē)
noun
